[Tonia]

Hello Sherry,

My heart goes out to you. This is a dreadful disease and it’s scary how things can progress so quickly.

I know that you are doing the best that you can as a caregiver and there is nothing worse than to have to hear from a doctor that nothing more can be done. However, this is one doctor’s opinion and in my experience, it is always good to get a second opinion.

If I may shed some insight as to why the oncologist decided not to proceed with the second cycle of dacogen, it’s probably because of the white count increasing to 107 after it had initially declined, signaling that the disease is progressing. However, I agree with Jack, get a second opinion. At 74 and no other heatlth problems, he may still be a candidate for chemo. This will all depend on the experience and comfort level of the treating oncologist.

My prayers go out to you and your dad.

[Tonia]

Hello Sherry,

I truly feel your pain since I am living with the same dilemma. My mom was diagnosed with RAEB-2 with 13% blasts in October 2006 and we lived through the nightmare of learning about MDS and it’s devastating effects. She was one month shy of her 80th birthday at the time of diagnosis and not considered a candidate for induction chemotherapy. She was treated with 3 cycles of dacogen (obtained through compassionate use) and after having a rough time with the 3rd cycle (blood counts bottomed out, developed pneumonia) we were bracing ourselves for the worst, that she had transformed to AML. And then a miracle happened, the BMB in Aug. 2007 showed 0% blast so her hematologist started her on Procrit. After 2 months of injections, her hemoglobin jumped to 12.2 and she was free of transfusions for 16 months. Her platelets and neutrophils never came back to normal levels, but were "stable" (neutrophils between 0.6-0.9, platelets between 60,000-80,0000). Then in March of this year, the unthinkable happened. Her blood counts dropped drastically and a BMB at the end of May showed blasts of 20%. She has transformed to AML. Her latest counts on Monday showed a hemoglobin of 7.1, platelets 38,000 and neutrophils 0.89. She is receiving blood transfusions every 2 weeks and neupogen injections 3 times a week. Her doctor wants to treat her with Vidaza since she responded quite well to the first hypomethylating treatment with Dacogen. The decision to try Vidaza instead of Dacogen was based on recent data showing that Vidaza has an overall survival benefit in high-risk MDS/AML.
The problem is that Vidaza is not approved in Canada, and the only way to access the drug is through the compassionate use program. This means that Health Canada needs to authorize the hospital to import the drug from the US and this can be a lengthy process. We have been waiting for 2 weeks and still no response from Health Canada. In the meantime the clock is ticking and every day that passes without treatment is a day less for my mom, and this is very frustrating. At times I feel so helpless, all I can do is cry and pray.
My mom has always been the pillar of strength in our family and to watch her get so weak and short of breath is heartbreaking.
But we must keep the faith and hope. So I am praying for a second miracle. I pray that the drug will be authrorized and that she can start treatment soon. While there are no guarantees that the drug will work, we need to try.

[Author]

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